Neurofibromatosis Financial Planning: The GINA Gap, Koselugo Costs, and SNT Strategy for NF1 and NF2

Neurofibromatosis type 1 affects approximately 1 in 3,000 people — making it one of the most common single-gene disorders in medicine, as common as cystic fibrosis and Huntington's disease combined. But NF's financial planning challenge is unique among hereditary conditions: it is simultaneously one of the most variable conditions on the spectrum (some people have only café-au-lait spots; others develop life-altering plexiform neurofibromas or malignant peripheral nerve sheath tumors) and one of the most common, which means financial advisors who have "seen a case" may have only seen a mild one. Getting the financial plan right requires understanding where on the severity spectrum the affected person is — and what the plan must look like at each point on that spectrum.

NF1, NF2, and schwannomatosis: three different conditions with different financial planning needs

The term "neurofibromatosis" covers three genetically and clinically distinct conditions that share a predisposition to nerve sheath tumors but have very different financial planning implications.¹

This guide focuses primarily on NF1 (the most common type with the broadest severity range) and NF2-related schwannomatosis (with its specific hearing-loss financial planning implications). SMARCB1/LZTR1 schwannomatosis shares the GINA gap issue and follows the same chronic pain disability financial planning principles covered in the Ehlers-Danlos Syndrome financial planning guide.

NF1 severity spectrum: why the financial plan varies so widely

NF1 is caused by a mutation or deletion of the NF1 gene on chromosome 17, which encodes the neurofibromin protein — a tumor suppressor. The condition is autosomal dominant with complete penetrance but highly variable expressivity, meaning every NF1 gene mutation carrier will show some features of NF1, but those features range from trivial to severe even within the same family.¹

Koselugo (selumetinib) and the Medicaid preservation imperative

In April 2020, the FDA approved selumetinib (Koselugo) for children with NF1 who have symptomatic, inoperable plexiform neurofibromas — the first ever treatment specifically approved for a feature of NF1. On November 19, 2025, the FDA expanded approval to adults with NF1 with symptomatic, inoperable plexiform neurofibromas.²

Koselugo is an MEK inhibitor taken twice daily as an oral capsule. Dosing is based on body surface area (BSA), meaning children and smaller adults require fewer capsules than larger adults. Based on published pharmacy pricing and clinical data for a typical patient:

The adult approval is significant because NF1 plexiform neurofibromas can grow throughout life — and for adults who have stable but symptomatic plexiforms, Koselugo has become a viable long-term treatment option. For any adult with NF1 who is on or may need Koselugo, Medicaid preservation follows the same logic as other high-cost biological therapy conditions: losing Medicaid to a benefits planning error can cost more in one prescription refill than the financial mistake that caused the loss.

AstraZeneca operates a patient assistance program (KOSELUGO Ready) that can provide the drug at no cost to commercially uninsured or underinsured patients who meet income criteria, and $0 co-pay for commercially insured patients up to an annual limit. But these programs are administrative — not guaranteed — and do not substitute for Medicaid as the structural insurance floor for adults who cannot maintain commercial employment.

SSDI and SSI qualification: no direct listing, multiple pathways

Unlike some specific rare diseases, NF1 has no dedicated Blue Book listing in the SSA's impairment criteria.³ SSA evaluates NF1 and NF2 claims through the features each condition produces in the applicant — which means the correct qualification pathway depends entirely on the person's specific presentation.

NF1 qualification pathways

• Listing 12.11 — Neurodevelopmental Disorders (learning disability, attention-deficit/hyperactivity): Applies when NF1-associated learning disabilities and ADHD produce marked limitations in understanding and applying information, interacting with others, concentrating and maintaining pace, or managing oneself. NF1 is the underlying cause; what SSA evaluates is the functional effect. A person with documented NF1-associated learning disabilities and documented academic or occupational limitations from ADHD who cannot maintain sustained competitive employment is a reasonable candidate for this listing.
• Listing 12.05 — Intellectual Disorder: A smaller subset of NF1 individuals (~5–10%) have comorbid intellectual disability. If full-scale IQ meets SSA's criteria and adaptive deficits are documented, this listing is a stronger, more direct pathway than 12.11.
• Listing 11.02 — Epileptic Disorder: Seizures occur in approximately 6–7% of NF1 individuals and are more common in those with brain tumors (optic pathway gliomas, brainstem gliomas). If seizures meet the frequency and documentation thresholds in Listing 11.02 (generalized tonic-clonic ≥1/month; dyscognitive seizures ≥1/week; lower frequency with marked limitation), this is a clean qualification pathway regardless of other NF1 features.
• Special senses — visual impairment: Optic pathway gliomas (OPGs) occur in approximately 15% of NF1 individuals, and progressive visual loss occurs in roughly one-quarter of those. If vision has deteriorated to legal blindness (20/200 corrected or worse in the better eye, or visual field ≤20 degrees), SSA Listings 2.02 and 2.03 apply. Blind status changes the SSDI SGA threshold from $1,690 to $2,830/month in 2026 — a meaningful difference for partially sighted working NF1 adults.
• RFC (Residual Functional Capacity) — functional approach: If none of the above listings are met individually, an adult with documented NF1-related pain (from neurofibromas), limited mobility (from plexiform involvement of the spine or extremities), cosmetic disfigurement affecting ability to work in public, and cognitive limitations from the combination of learning disability and ADHD may qualify through a "step 5" RFC determination showing that no competitive work is available given all limitations together. This approach requires careful medical documentation and often attorney representation.

NF1 with MPNST: Compassionate Allowance fast-track

Malignant peripheral nerve sheath tumors in NF1 are included on SSA's Compassionate Allowances list.⁴ An NF1 patient with a confirmed MPNST diagnosis is eligible for approximately 10-day disability determination — the same CAL fast-track as other aggressive cancers. This means that at the moment MPNST is confirmed, SSI or SSDI should be filed immediately along with documentation of the NF1 diagnosis and the malignancy confirmation. Given MPNST's aggressive prognosis, rapid establishment of SSDI (and the Medicaid or Medicare that follows) is a genuine financial emergency.

NF2-related schwannomatosis: hearing loss listings

NF2-related schwannomatosis's defining feature — bilateral vestibular schwannomas — produces progressive sensorineural hearing loss in nearly all affected individuals, typically progressing to deafness by middle adulthood. SSA evaluates hearing loss under Listings 2.10 and 2.11:

• Listing 2.10A: Average hearing threshold of 90 dB or greater in the better ear (without cochlear implant), measured by pure-tone audiometry. Many NF2-related schwannomatosis individuals with bilateral tumors will meet this threshold as tumors progress.
• Listing 2.10B: Word recognition score of 40% or less in the better ear (without cochlear implant). Because bilateral vestibular schwannomas compress the cochlear nerve in addition to causing sensorineural hearing loss, word discrimination often deteriorates more severely than pure-tone thresholds predict.
• Listing 2.11: For individuals with cochlear implants, the listing requires word recognition score of 60% or less in the better ear 3+ months after implantation. This pathway applies if a cochlear implant was attempted — though in NF2-related schwannomatosis, auditory brainstem implants (ABIs) are often preferred over cochlear implants because cochlear implants rely on an intact cochlear nerve, which is compromised by the vestibular schwannomas. ABIs are more complex and less effective than cochlear implants; most ABI patients achieve sound awareness but limited speech understanding without lip-reading.

GINA insurance gap: the central risk for every NF family

The Genetic Information Nondiscrimination Act (GINA) prohibits health insurers from using genetic test results to deny coverage or raise premiums, and prohibits employers from using genetic information in hiring, promotion, or termination decisions. But GINA explicitly does not apply to life insurance, long-term disability insurance, or long-term care insurance.⁵

For NF — an autosomal dominant condition — this gap is severe and practical:

• Adults with NF1 or NF2 who have never sought life insurance or LTD coverage may have extensive documentation of their diagnosis in their medical records. An insurer underwriting life or disability coverage can legally request medical records, discover the NF diagnosis, and decline coverage or offer a rated (higher-cost) policy reflecting the applicant's condition and its potential complications.
• Children of an affected parent have a 50% chance of inheriting NF1 or NF2. If genetic testing is done to confirm whether a child inherited the mutation — a common choice — and the test result becomes part of the child's medical record, that documented genetic information can be used by life and disability insurers when the child becomes an adult and applies for coverage.
• Parents who have NF1 themselves may have had complications (plexiform neurofibromas, surgeries, learning disability documentation) that are now in their medical records. Securing life insurance before complications worsen is critical.

The practical planning rule: life and LTD insurance should be applied for and secured before genetic testing results are in the medical record — or, if genetic testing has already been done, before complications develop and before function declines significantly. Once MPNST is diagnosed, standard-rate life insurance is unobtainable. Once plexiform neurofibromas have produced documented functional impairment, LTD insurance rates will reflect that impairment. Once a child's NF1 is confirmed in their medical record, their future insurability is an open question.

State-level protections vary: California, Florida, and a handful of other states have passed laws extending some genetic discrimination protections to life or disability insurance. If you are in a state with such protections, check whether they cover your specific situation — but do not assume state protection exists; verify it and do not rely on it as a substitute for acting before the record is established.

Learning disabilities and ADHD in NF1: ABLE accounts and Section 1619(b)

Most adults with NF1 have mild to moderate presentations and are employed — but at reduced function compared to their intellectual potential, and often in roles below what their intelligence would suggest, because of learning disabilities and ADHD that were not diagnosed or treated effectively in childhood. Research documents learning disabilities in 30–70% of NF1 individuals and ADHD in 40–70%, with these rates persisting and affecting employment in adulthood.⁶

For NF1 adults who receive SSI due to their learning disability or ADHD, and who are working (or trying to work), the benefits planning toolkit is the same as for other neurodevelopmental conditions:

Section 1619(b): keep Medicaid while earning above SGA

Section 1619(b) allows an SSI recipient to earn above the Substantial Gainful Activity threshold ($1,690/month in 2026 for non-blind individuals) and see their SSI cash benefit reduced to zero — while retaining Medicaid coverage. For NF1 adults whose Medicaid covers Koselugo ($200K+/yr), ongoing neurological monitoring, and any surgical interventions, losing Medicaid to an earnings miscalculation is catastrophic. Before accepting any significant earnings increase, an NF1 adult on SSI should confirm their state's 1619(b) threshold and ideally consult a Work Incentive Planning and Assistance (WIPA) counselor.

Impairment-Related Work Expenses (IRWE)

Expenses that are necessary for work and related to the NF1 disability can be deducted from countable earned income in the SSI formula — and also used to increase the individualized 1619(b) threshold. NF1-specific IRWE candidates include:

• Tutoring or academic coaching for documented learning disabilities
• ADHD coaching or executive function support services
• Specialized software for reading, organization, or task management
• Transportation (when driving restrictions apply, e.g., from visual field loss due to optic pathway glioma)
• Pain management supplies for those with neurofibroma-related chronic pain

ABLE account for working NF1 adults

ABLE accounts in 2026 allow contributions of up to $20,000/year from all sources, with an additional $15,650 from the beneficiary's own earned income (ABLE-to-Work). Eligibility requires disability onset before age 46 — NF1, as a congenital condition, always qualifies on the age criterion.⁷ For an NF1 adult who works, an ABLE account serves two functions:

• Sheltering savings from the SSI $2,000 resource limit (up to $100,000 ABLE balance)
• Funding disability-related daily expenses — tutoring, ADHD coaching, adaptive software, transportation — without requiring SNT trustee approval

The ABLE account and a Special Needs Trust work together, not as alternatives: the SNT holds the larger capital reserve (funded by parents' estate plan and life insurance), while the ABLE account provides day-to-day flexibility for recurring disability expenses. See the SNT vs ABLE Account comparison for detailed mechanics.

NF2 financial planning: hearing technology and surgical costs

NF2-related schwannomatosis families face a specific set of costs that the SNT must anticipate:

Bevacizumab (off-label) — ongoing treatment for vestibular schwannomas

Bevacizumab (Avastin), an anti-VEGF monoclonal antibody developed for cancer treatment, is used off-label to shrink or stabilize vestibular schwannomas in NF2 and preserve hearing in some patients. Dosing is typically 5–10 mg/kg every 2–4 weeks. At typical commercial rates for an adult, bevacizumab treatment for NF2 costs approximately $50,000–$200,000 per year depending on dose, frequency, and payer negotiated rates.⁸ Coverage varies significantly by insurer: commercial plans may cover it as off-label use; Medicaid coverage is state-dependent. For NF2 patients receiving bevacizumab, Medicaid preservation follows the same logic as Koselugo for NF1 — a resource mistake that destroys SSI has first-order treatment access consequences.

Surgery and radiosurgery reserve

Most NF2-related schwannomatosis individuals will require at least one surgical intervention or radiosurgery procedure for a vestibular schwannoma during their lifetime:

• Microsurgical tumor resection: $50,000–$150,000+ per procedure; may be required multiple times
• Stereotactic radiosurgery (Gamma Knife, CyberKnife): $20,000–$60,000 per session
• Auditory brainstem implant (ABI) surgery: $75,000–$200,000 for the device and surgical procedure; ongoing processor upgrades and audiological support

SNTs for NF2-related schwannomatosis individuals should include a surgical reserve adequate to cover at least one major tumor intervention and device upgrade cycle. Distribution language should explicitly authorize these costs.

Hearing assistive technology and communication support

As hearing loss progresses in NF2-related schwannomatosis, the cost cascade of assistive technology increases:

• Hearing aids (early stage): $2,500–$8,000/pair
• CART (Communication Access Realtime Translation) captioning for work: $3,000–$8,000/year if not employer-funded
• Video relay service, captioned telephones: nominal ongoing cost
• ABI processor upgrades (post-implant): $5,000–$15,000 every 4–7 years
• Sign language interpreter services (if communication shifts): $50–$100/hour

SNT distribution language for NF2-related schwannomatosis should mirror the hearing loss guide's language covering hearing technology, captioning, communication supports, and surgical procedures. See the Hearing Loss Financial Planning guide for additional NF2-applicable detail.

SNT sizing across the NF severity spectrum

The range of appropriate SNT corpus targets for NF is wider than almost any other condition — because NF's severity range is wider. These are illustrative starting points, not guarantees:

Use the SNT Funding Calculator and Lifetime Care Cost Calculator to model specific scenarios. The key variable in NF1 planning is whether Medicaid coverage of Koselugo is maintained — if it is disrupted, the required SNT corpus increases substantially to cover treatment costs from trust assets directly.

Third-party SNT: structuring family gifts and estate plans for NF beneficiaries

Because NF1 is autosomal dominant, the parent who is writing the estate plan may also have NF1 — with some features that affect their own health, longevity, and cognitive capacity. This creates a planning consideration not present in most other conditions: the grantor and the beneficiary may both have NF1, with different severities. The estate plan should account for the parent's own potential health trajectory, not just the child's.

Key estate planning rules for NF families:

• Never name the NF1 or NF2 beneficiary directly in a will or as a beneficiary of a retirement account or life insurance policy. A direct bequest or designation to an SSI recipient destroys Medicaid eligibility immediately. All assets intended for a family member with NF who receives SSI must route through a third-party Special Needs Trust.
• Grandparents, aunts, and uncles who want to provide for the NF family member should update their wills and beneficiary designations to name the SNT, not the individual. Annual gifts ($18,000 per donor in 2026 under the gift tax exclusion) should go to the SNT or the parent, not directly to the beneficiary if they are on SSI.
• Siblings who carry the 50% risk of NF1 but are currently unaffected present a planning question: if a sibling later develops significant NF1 features, should their own inheritance plan include an SNT-ready structure? A springing SNT — one that activates only if disability is established — is one approach for families with a 50%-risk sibling who is currently mild or unaffected.

NF1 children and the guardianship question

Most NF1 adults do not need guardianship — the cognitive impact of NF1 does not rise to the level of incapacity for the majority of individuals. Supported decision-making agreements (available in most states) and representative payee designation for Social Security can provide structure without the legal and financial overhead of guardianship. See the Guardianship vs. Supported Decision-Making guide for the full framework and when each applies.

For NF1 adults with intellectual disability as a comorbid condition, or NF1 adults with progressive cognitive decline (rare, but associated with some brain tumor complications), guardianship evaluation at 18 follows the standard timeline. The transition planning checklist at When Your Special Needs Child Turns 18 applies to NF1 youth with any functional impairment that requires SSI eligibility evaluation at age 18.

Priority action checklist for NF families

1. Secure life and LTD insurance before the genetic record is extensive. For parents with NF1 who do not yet have adequate coverage, and for NF1 teens approaching adulthood, act before complications develop and before insurer underwriting reflects the full NF1 clinical picture. GINA does not protect these products — state law varies — and the window narrows with every medical entry that documents disease progression.
2. Do not confuse NF1 severity at one point in time with lifetime severity. NF1's variability means a currently mild presentation can change. A financial plan built only on current severity may be inadequate if plexiform neurofibromas grow, if an optic pathway glioma is found on routine surveillance MRI, or if MPNST develops. Build in contingency SNT funding that covers the next-severity scenario, not just the current one.
3. Apply for SSI and SSDI if functional limitations exist. There is no dedicated NF1 listing, but there are multiple pathways. Many families with a functionally impaired NF1 child or adult have never pursued SSI because the condition "doesn't seem severe enough" compared to other diagnoses — but functional limitations from learning disabilities, ADHD, visual loss, seizures, or pain may be sufficient. A disability attorney familiar with functional capacity claims (RFC) can evaluate whether the case qualifies.
4. Understand Section 1619(b) before the first earnings milestone. NF1 adults on SSI who are employed need to know their state's 1619(b) threshold before earnings approach it — especially if Koselugo coverage via Medicaid is the goal. An earnings increase that crosses the threshold without triggering the individualized calculation can cause unintended Medicaid termination.
5. Establish an SNT before any financial gifts arrive. Grandparents who want to help financially should be redirected to the SNT. A $25,000 direct deposit to an SSI-eligible NF1 adult destroys benefits. The same $25,000 to the SNT preserves every benefit while still providing the support.
6. Apply for HCBS waiver early if functional impairment is significant. NF1 adults with functional impairment requiring personal care or residential support should apply for the HCBS physical disability waiver (not the DD waiver, unless intellectual disability is also present) as early as possible. Waitlists range from 1 to 7+ years in many states. See the HCBS Medicaid Waiver guide.
7. NF2 families: pursue SSDI as hearing loss becomes severe. Don't wait until deafness is complete. File when audiological documentation meets Listing 2.10A or 2.10B thresholds. Earlier SSDI establishment means earlier Medicare access — which can supplement or replace bevacizumab coverage on Medicaid.
8. Ensure all estate planning documents are NF-aware. Wills, retirement account beneficiary designations, and life insurance policy beneficiaries should all be reviewed to confirm no asset flows directly to an SSI-eligible NF family member. Redirect to the SNT. See the Estate Planning Checklist for Special Needs Families.

Sources

1. Children's Tumor Foundation — Types of Neurofibromatosis. NF1 prevalence: approximately 1 in 3,000 births worldwide; caused by mutation in the NF1 gene (chromosome 17) encoding neurofibromin. Autosomal dominant with complete penetrance, highly variable expressivity. 50% of cases are de novo (new mutations, no family history). NF2-related schwannomatosis: approximately 1 in 25,000; NF2 gene (chromosome 22) encoding merlin; bilateral vestibular schwannomas as hallmark. SMARCB1/LZTR1 schwannomatosis: approximately 1 in 40,000; painful schwannomas without vestibular involvement. All three conditions included on Children's Tumor Foundation NF type overview as of 2026. Plexiform neurofibroma to MPNST malignant transformation: 8–13% lifetime risk in NF1.
2. FDA — Approval of Selumetinib (Koselugo) for Adults with NF1 (November 19, 2025). FDA approved selumetinib (Koselugo, AstraZeneca) for adults with neurofibromatosis type 1 who have symptomatic, inoperable plexiform neurofibromas, expanding the April 2020 original approval limited to pediatric patients. Dosing: 25 mg/m² body surface area twice daily, oral capsule. Koselugo is an MEK inhibitor. 25 mg capsule retail price approximately $6,815 for 28 capsules (GoodRx 2026); annual cost ranges from approximately $180,000 for a child (~1.0 m² BSA) to $300,000+ for an adult with larger BSA, based on published Canadian pharmacoeconomic analysis (BSA 1.12 m² = ~$268,000/year) and US retail capsule pricing. AstraZeneca patient assistance program (KOSELUGO Ready) available for eligible patients; does not substitute for Medicaid coverage for patients with no commercial insurance.
3. SSA Blue Book — Adult Listings of Impairments. No dedicated listing for neurofibromatosis. NF1 and NF2 are evaluated based on their specific functional manifestations: Listing 12.11 (Neurodevelopmental Disorders — learning disability, ADHD); Listing 12.05 (Intellectual Disorder — if NF1 is accompanied by intellectual disability); Listing 11.02 (Epileptic Disorder — seizures occurring in ~6–7% of NF1 individuals); Listings 2.02–2.04 (visual impairment from optic pathway glioma — OPGs occur in ~15% of NF1, progressive visual loss in ~25% of OPG cases); RFC functional capacity determination for those with documented pain, mobility limits, or multi-system functional impairment not meeting a single listing. SSDI SGA thresholds 2026: $1,690/month non-blind; $2,830/month blind. SSI FBR 2026: $994/month.
4. SSA — Compassionate Allowances Conditions List. Malignant Peripheral Nerve Sheath Tumors (MPNST) are included on the CAL list, enabling approximately 10-day disability determination with sufficient medical documentation. NF1 patients who develop MPNST qualify for CAL fast-track under this listing. Standard NF1 without MPNST is not on the CAL list and is evaluated under standard Blue Book symptom-based pathways. CAL list as of August 2025 includes 300 conditions.
5. National Human Genome Research Institute — Genetic Discrimination and GINA. GINA (Genetic Information Nondiscrimination Act, 2008) prohibits health insurers from using genetic information to deny coverage or adjust premiums, and prohibits employers from using genetic information in hiring, firing, or promotion decisions. GINA explicitly does NOT apply to: life insurance, long-term disability insurance, long-term care insurance. Life and disability insurers may legally request and use genetic test results, family health history, and medical records when underwriting policies. Some states have enacted broader genetic discrimination protections for life and disability insurance — California, Florida, and a handful of others — but state law varies and no federal protection covers these products. Individuals with hereditary conditions including NF1 and NF2 should secure life and LTD coverage before genetic records accumulate or complications are documented, where possible.
6. Orphanet Journal of Rare Diseases — Neurocognitive Functioning in Adults with NF1: Nationwide Study (2024). Learning disabilities reported in 30–70% of NF1 individuals; Developmental Dyslexia prevalence approximately 50% in NF1 (nearly 3x general population rate); Developmental Dyscalculia approximately 18.8%. ADHD prevalence in NF1: 40–70% in childhood studies; psychiatric comorbidities in 46.5% of 43,270 adults with neurofibromatosis in nationwide Swedish registry analysis. ADHD symptoms persist into adulthood; impacts include unstable employment, reduced earnings, and lower educational attainment than IQ would predict. IRWE candidates for SSI: tutoring, executive function coaching, specialized software, transportation for vision-related driving restrictions.
7. ABLE National Resource Center — 2026 Contribution Limits and Eligibility. Annual ABLE contribution limit: $20,000 from all sources (2026). ABLE-to-Work additional contribution: up to $15,650 from beneficiary's own earned income (federal poverty level for one-person household, 2026). Age eligibility: disability onset before age 46, effective January 2026 (ABLE Age Adjustment Act). NF1 and NF2 as congenital conditions always qualify on the age criterion. SSI protection: ABLE account balance up to $100,000 does not count toward SSI's $2,000 resource limit. Section 1619(b) threshold 2026: $1,690/month SGA; state thresholds for Medicaid protection range $29,412–$84,208/year (SSA POMS SI 02302.200, updated January 2026).
8. PMC — Bevacizumab Treatment for NF2-Related Schwannomatosis (2024). Bevacizumab (Avastin), an anti-VEGF monoclonal antibody, used off-label for NF2-related schwannomatosis. Standard dosing: 5 mg/kg every 3 weeks (maintenance). Clinical evidence: majority of patients experienced improved or preserved hearing and effective tumor control. Adverse events include hypertension and proteinuria; approximately one-quarter of patients discontinued due to severe adverse events in single-center series. Annual cost varies significantly by dose, frequency, and insurer negotiated rate; typical commercial pricing for bevacizumab at standard oncology dosing ranges from $50,000 to $200,000 per year. Coverage: commercial plans may cover as off-label use with prior authorization; Medicaid coverage is state-dependent. Off-label status means coverage is not guaranteed and may require appeal. ABI surgery cost range: $75,000–$200,000 for device and surgical procedure; vestibular schwannoma microsurgical resection: $50,000–$150,000+; stereotactic radiosurgery: $20,000–$60,000 per session.

Rules verified against 2026 SSA, FDA, and ABLE standards. SSI FBR $994/month (2026). SSDI SGA $1,690/month non-blind; $2,830/month blind (2026). ABLE contribution limit $20,000/year; ABLE-to-Work additional $15,650/year; onset-before-46 eligibility (all 2026). Section 1619(b) thresholds per SSA POMS SI 02302.200, updated January 2026. Koselugo (selumetinib) FDA approval for adults per FDA press release November 19, 2025; cost ranges based on published pharmacy pricing databases (GoodRx 2026) and Canadian pharmacoeconomic analysis at 1.12 m² BSA. GINA scope per National Human Genome Research Institute and Facing Our Risk of Cancer Empowered (FORCE). NF prevalence per Children's Tumor Foundation. ADHD and learning disability prevalence in NF1 per Orphanet Journal of Rare Diseases nationwide study (2024). SNT corpus targets are illustrative based on care scenario assumptions and are not guarantees of adequacy.